It has been really hot lately. I got excited, thinking I could start taking paratransit again. Ever since I got the stickers for free medical rides on paratransit, I have only used 2 of the dozens of stickers given to me. So far, every time I have an appointment, it’s not over 80 degrees or below 40. Monday it was going to be 78 degrees when I left. By the time I got home, it was 86. Yesterday I took TRAX to the U. It’s generally easier to get there and back that way than any other method.
The wrench in the works besides exact temperatures is making reservations. I cannot call a day ahead when I need to go to the ER or if an appointment or need for an appointment happens quick. It’s easy to schedule a ride TO an appointment and almost impossible to know when to schedule a ride home. If I see my internist, he can be up to an hour late seeing me, and then keep me an hour or more past that. I never know.
There has got to be a better transportation system! Next week I need a ride to a place that will take me about an hour and a half to get to on a combo of TRAX and bus. You would think with a forecast like this, I could get a paratransit ride. Nope. Somehow when I need to go somewhere, the temperature is too low in the morning or it’s going to rain….making the commute even more difficult, but too cool in temp to qualify. When I most need a ride is when I am very weak…but that doesn’t count.
UTA paratransit was set up by the same sort of people as yesterday’s doc…focused on rigid economic parameters and not on real needs of real people. I don’t know how some folks do it, but their disabilities allow them unlimited use of paratransit. The longer I have lived here, the more grousing I have heard from people in my boat. I’m not the only one with stupid limitations put on my transportation with paratransit.
The next hurdle will be my new chair. I suspect that the combo of my weight and the new chair’s tipping mechanism will put me over paratransit’s weight limit. One more thing to stress out about. Sigh…..
Which reminds me. Yesterday’s doc thought the answer to my problems would be to start a GoFundMe and move out of Utah. She said she would be the first to donate. If only! In order for me to take in a bunch of money, I would need a trust fund set up. It costs $2,500 to pay a lawyer to do that. Several church people thought they knew a lawyer who would do it, but there is no such mythical beast. I have been searching for trust fund help at least a year now. The disability lawyers kept saying they would gladly donate $$ once I had such an account…but of course even they knew no one who would be willing to set up the trust fund.
Life as a poor disabled person is full of Catch-22’s. Things are set up so we cannot get ahead financially and we are not allowed direct financial help with food or shelter. I have some good news about SNAP…..sort of. Since my rent went up $25, SNAP goes up $7 starting this month. Whoop. Whoop. I just fall further and further and further behind. I now get $1.05 per meal instead of 98 cents per meal. Too bad the cost of basic groceries goes up every time I go to the store 😦
I was really dizzy and tried to take pics of the dizziness 🙂 I guess it doesn’t work that way. Everybody knows when I am dizzy by looking at me. I want to see what I look like! I look like the usual dazed and confused me.
Yesterday and today, when I least suspect it, I suddenly get a tight feeling in my left chest, then after that lets up, I get the elephant on the chest sensation. And then I get one-sided sharp head pain and pretty soon I forget all about it until it happens again. I have never had that particular series of sensations before. It still feels like something is wrong with my left lung. When it’s happening, it’s as if a sword is being stuck in my back.
Oh….and this morning was like the ones before it. I slept OK. It was only when I sat up that the pain pierced into my shoulder blade and through my lung again. The ER doc only cared about my heart, the internist was only miffed that the ER had not done a CT scan and the acute care doc was there for the hernia. If they don’t care…should I not care? Does my heart beating crazy a few days before have anything to do with the lung pain now? Who knows? I think I am getting a fever.
The theme for today is low energy, feeling tired and blahness. I am too wiped out to do anything. I’m glad I took a pic when I was just dizzy, not droopy. This afternoon I feel like the lupus and MG are having a war. I feel icky. I can only smile on one side and my eyelids are drooped. I feel weak all over. What set off the weakness was the chest pain. I have not left my apartment all day and the A/C has been on full blast. I look like I have been in the sun. Stupid diseases! Sigh…..
Olive has been worried about me.